To investigate the health-related quality of life (HrQoL) of adult patients with Gilles de la Tourette's syndrome (GTS) in Germany. HrQoL was evaluated in 200 adult patients with GTS (Mean age: 34.9 +/- 11.8 years). Patients were recruited from three outpatient departments in Germany and completed a semi-structured, self-rating interview. HrQoL was measured using the EQ-5D. Depression was assessed using the Beck's depression inventory (BDI) and clinical symptoms using the Yale Tourette syndrome symptom list (TSSL) and the Shapiro Tourette-syndrome severity scale (STSSS). Multivariate regression analyses were performed to identify independent predictors of HrQoL. Patients with GTS proved to have a worse HrQoL than a sample from the general German population. The domains most affected were anxiety/depression (57.1%), followed by pain/discomfort (47.5%), usual activities (38.4%), mobility (14%), and self-care (6.6%). The mean EQ-5D visual analog scale (EQ-VAS) was 65.4 +/- 21.9. The patients had a mean BDI score of 12.3 +/- 9.9, which was considerably worse compared to a healthy group who had a score of 6.45 +/- 5.2. The mean STSSS value was 3.2 +/- 1.1. In multivariate analyses, depressive symptoms contributed considerably, whereas the severity of symptoms as well as age only contributed minimally to HrQoL in the model (R(2) = 0.54). HrQoL is considerably reduced in adult patients with GTS. The main independent factors for determining HrQoL were depression, severity of symptoms, and age. Although, treatment of tics is important, co-morbidities such as depression should be diagnosed and treated vigorously.

We evaluated the health economic burden of patients with Gilles de la Tourette's syndrome (GTS) in Germany over a 3-month observation period. Direct and indirect costs were evaluated in 200 outpatients with GTS (mean age 35 +/- 11.5 years) in Germany. Patients were recruited from three outpatient departments that specialized in GTS and completed a semi-structured and self-rating interview with questionnaires screening for direct and indirect medical and non-medical costs, health status, depression, amount and severity of symptoms. Costs were obtained from various German medical economic resources. Indirect costs for lost productivity were calculated using the human capital approach. Costs were calculated from the point of view of healthcare and transfer payment providers and the individual patient. Multivariate regression analyses were performed to identify independent cost predictors. Costs are in year 2006-2007 values. Direct costs were 620 +/- 1,697.1euro, including rehabilitation 98.8 +/- 993.6euro, hospitalization 195.8 +/- 1,267.8euro, outpatient treatment 14.0 +/- 40.6euro, ancillary treatment 51.9 +/- 137.4euro. Drug costs were 223.1 +/- 430.4. The indirect medical costs amounted to 2,511.3 +/- 3,809.5euro for productivity loss and to 220.0 +/- 1,092euro for absenteeism. The following variables were found to impact on direct costs: employment status, occupational advancement, depression, quality of life, age. Disease severity had no influence on cost. Because of the earlier age of disease onset, indirect costs are higher than direct costs. Interestingly, disease severity did not influence the resource need in this population. Unfortunately, no cost of illness studies are available for comparison. Further health economic studies, especially cost-effectiveness studies, are necessary for a basis for rational resource allocation.

Our study emphasizes the large economic burden caused mainly by PD medication and hospitalization. For the first time a direct comparison between costs and actual physicians' reimbursement was possible. In combination with further economic studies, this comparison will help to define shortcomings and excesses in PD health care services.

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